“Most importantly, let us know how we can help you…we're DAS and we are at your service.“

-- Brenda L Sisco, Commissioner

State of Connecticut Department of Administrative Services

Ladies and Gentlemen:

To begin: I've been asking for questions to be answered; I have not been, nor am I, asking anyone to bend or break rules. I'm never sure if I'm asking for anything to which I am entitled, because no one has been able to answer, completely, the entitlement dates and rules.

I'm pleading with you to please read what I have to say. It shouldn't take long; it only took me 22 minutes to type.

[I took 22 minutes to type this email, although I haven't covered everything, because that's how many minutes were wasted on my cell phone, listening to the definition of “spend-down,” which I'd already said I understood. I was trying to get one question answered. This email, therefore, covers everything I could have asked if my time - and the State's - hadn't been wasted. However, you can also note that I've been writing this in my head for three days.]

I really hate the ride. Ten minutes on the highway - cake - and the next seven miles on a main/secondary road which keeps changing, and so does the speed limit (which I'm trying to obey in more than my own town, since I'm trying to make my own town a better place). It's annoying that the facility is way out to hell and gone but (1) the north haven facility doesn't take my insurance (although the dr does) - over $2000 extra and (2) MyRide doesn't go up there, so I drove myself and I forewent the anesthesia again. 

Even so, it's just super uncomfortable, not miserable. I went in around 2:35. Blood pressure, go into the procedure room, "drop 'em", put in my headphones to try to relax, get swabbed. Doc comes in, pats me on the shoulder. I hear, "Pinch and burn."  OH YEAH it burns.  Then, "Pressure, pressure..." and I could feel the pressure down my left leg and in my belly. Needle out, no bleeding so no bandage. Lie still for a few minutes until I can bend my stiff leg. Roll over, get up. Show tattoos to the tech. give her Kenny Cuccaro's name. Go to Recovery, sit for a few minutes, then hear my alarm to remind me to take my 3:00 Lyrica. Ask for crackers and water, since I've been fasting since 8:40 (next time, per Doc, I can have lunch) a.m. As soon as I get my BP results (120/80 post-procedure), I go back into the sweltering heat - my car hasn't even had time to start boiling.

The tech told me that Panera was across the street! It's a big deal to those of us who have to travel five miles to the closest (to the damn mall and I hate the mall). I got a coffee (don't care that it was hot - I had finished my first and only cup at 7:30 a.m.!!) and an orange scone (because I love orange scones) and drove home. 

At least, with the annoying drive, I had time to contemplate: It was 100F in Wallingford. I can't believe that the Yankee Silversmith closed! I'm glad I have air conditioning in my car, and I really felt bad for the older people I saw driving with hot air blowing in their faces. I wished I could ride my tricycle on some of this road. I can't believe Walgreen's is torn down (though I think they may be rebuilding). I can't get over a restaurant, boarded up, catercorner from the train station. AND how it's not fair that gasoline prices are skyrocketing just as we need to use our car air conditioners. (If I didn't have after-work errands today, my leg be damned I would have taken the trike to work. It's only a little numb now. I can't take it tomorrow - we have a deposition scheduled, and I don't think that it would look professional for the Plaintiff's attorney's secretary to have a tricycle chained to the stairs...)

Ice on for fifteen, off for fifteen. My mom made me a salad for dinner - it was really good. And that should have been it.

Until I checked my MySpace messages. And saw Alli's Friend Status: Worried

Damn it ALL: Libby's cancer is back. Again.

When I'm in charge of the world, nice people won't get cancer, only evil people. And by the off chance nice people get cancer, it won't keep recurring.

With the exception of meeting her husband, Libby can't catch a flippin' break. It's just NOT FAIR and I don't care that life isn't fair. She's everyone's best friend. (I treasure her like a sister, truly like a sister.) Her post last night was about 1/4 news of what's happening, 1/8 "please pray," 1/8 asking about alternative treatments, and the other HALF telling her friends how much she loves us.) I haven't seen her since she organized a benefit for the cancer center. (that time was just a trim... the gas cost more than the cut, but I figured that presences in front of the TV cameras was more important than just mailing a check for the amount of the cut)

She's asking for prayers - that she can get surgery. If you know her, or if you're the praying type, or both...

I am going to ask her if, while she waits for surgery, an epidural like mine might be a source of temporary relief. Because they use X-Rays to assist in guiding the needle, it MIGHT be possible.

I'm calling her now. (Wish me luck getting through: the hosp. phone number was bulletined on Myspace; it's already busy.)

last week, Mona began an actual fibromyalgia program on me: she'd found the information on the 'net and printed it. i'm happy to let her "practice" on me; if she hurts me, i'll tell her, and maybe she'll be able to set up a program for other people like me. (yes she's totally licensed and board certified. that doesn't mean that every single existing technique is taught to students AND i really respect that she spends her personal time researching for her clients.)

we began with towels for my "modesty" instead of the sheet. (i absolutely cannot take off my underwear; the office is next door to where the police station was when i was growing up, and that whole thing is too creepy.) she massaged my neck and sternum. it was weird: she totally protected my modesty but, as she worked the sternum, it felt like the mere beginnings of a breast examination! (she was totally professional and we laughed about it - it's obviously been a long time since anyone... touched my sternum.)

the difference between this and the other massages i've had over the past year is the directionality of the strokes she uses in the massage. i want to give it another week but, between that and the "traction" she did with her hands, i woke up feeling a bit achey but... otherwise, normal! (last time i felt that good, it lasted for three days. i think i wrecked this, though: i was on the phone for an hour with a client's mom - actually, we were talking about OKCupid... i had the [i hope Mona doesn't read this] phone on my shoulder the whole time, while i typed. not good.)

all i wanted to do when she was done was NAP but i didn't think i'd get up (and was also afraid that i'd roll over, on the massage table, and fall off), so i got dressed and went home.

my work is done, so i think i'll just post this and then finish michener's hawaii. and update my shelfari.

and maybe order a book...

the state's program is based on salary and not how sick one is, so i figured i'd be denied. this was the guy - the commissioner - who put his head in his hands and said to the worker assigned to me, "isn't there something we can do for this poor girl?"

social security isn't accepting "fibromyalgia" as a reason that i can't work. there was also a comment that my mental health is fine, which must have come from my former psychiatrist. (didn't she pay attention to anything i said??)

i've got a call in to an attorney whose name i got in the waiting room at the pain center. the patient to whom i spoke claims that she never loses. i left that on the voicemail.

i'm miserable. i'm feeling - even as i sit here, at my desk, with pains in my right knee (which almost never hurts anymore), the joints in my fingers, my neck, my lower back, that i've managed to lie to myself and to my doctors, that i'm one hell of an actress. i forgot, over the weekend of sulking, how much i used to enjoy writing, how i used to post daily, how i'd managed, without advertising, to make Modified News popular enough to pay for itself, though not for any of its other expenses, and how the mere act of moving my laptop from its resting place into my lap is... too much trouble because it's too heavy. (it hurts my hands to hold a paperback open.) i'd forgotten how much i used to love to drive, and how now i don't want to go farther than the doctors' or the supermarket. this is what the Government is telling me - that i'm a faker - and i'm supposed to believe it. (i'd even forgotten how much i distrust the government, these days!) thanks a lot.

what really galls me is that if i'd been irresponsible, if i'd gotten knocked up while unmarried, i could have gotten State with no questions. if 'd stopped working and had lied to my doctors, just a little bit, had just laid it on a little thick, i could have been written out of work permanently instead of trying to get in a few more years before my condition deteriorates. (i have a LOT of friends with fibromyalgia, and with worse problems. while i'm healthier than they are, now, i can honestly feel myself deteriorating, and doubt that i've got ten years left in the work force.)

i'm really pissed that they're making me feel this way. i'm also pissed that my pain is rubbing off on my mom. it WILL pass, and i'll be more cheerful and won't drag down my mom anymore, i hope.

sigh. i'm at work. my boss is out and, with the exception of some phone calls, my work is done. i guess i'll use this opportunity to clean out my gmail inbox. if i owe you an email, i'm sorry; it got out of control when my dad was sick last summer and i haven't been able to catch up. and there are more every day... (there are over 300 emails that seem to NOT be spam...)

(there is a cat on my car! it is trying to get in via the open sunroof. i'm glad i didn't open it in moon-roof mode...)

No. It was the [original] crank shaft and timing belts. (yes, plural - they should have been changed, so I read, at the 96K mark. from what I've googled, it's "main timing belt and a balance shaft belt"). When Dre held the crank shaft, it crumbled between his fingers. The timing belt he showed me was missing so many teeth that I felt like I was in the front row of a Willie Nelson concert. guess it's a good thing that I'm not a big fan of shopping, since the bill for the car (not even including the gratuities - two mechanics, one of whom drove me to work for two days as well as worked on the car, until i got a rental) repair (not including aforementioned rental) was comparable to a month's health insurance. or two weeks' takehome salary.

because jacob was going to be in the shop all weekend, and i needed to go to the doctor, and to pick up prescriptions, I figured that a rental would be cost-effective. i got it friday (my boss let me leave work to get it) and returned it within twenty-four hours. slightly annoying that I went through the trouble, but cheaper than the taxi I would have needed on Friday. (I was out of one prescription as of last Wednesday. My backup was actually in the trunk of the car, since the doctor had given me samples I hadn't remembered to bring into the house.)

It wasn't a great week. Along with my car, my office copier (and then) my office printer broke. However, the second repairman just left, and everything's happy again.

Meanwhile... the pain center in New Haven is closing. I can either go to their Meriden office, which is nearly 25 miles each way, or to the Derby office, which is "only" twelve miles each way. (New Haven is only 4.9 miles from my house, or 4.4 miles from my office.) The extra eight to 21 miles may not seem like a lot to many people, but it's going to mean extra gasoline each month, and extra driving... (which I don't do well when it rains - and with an office closing and a whole practice dumped on two other offices, I may not be able to reschedule appointments based on weather.)

MyRide may be an option; round trip to Derby is less than a gallon of gas. I'm sending my application.

I could look for another doctor - but this one believes me. I was in the waiting room on Friday for over an hour (and they think it will be cost-effective to close one whole office and split the patients between the other two practices??) talking to people whose doctors didn't believe them, whose families call them "lazy," who have to choose between necessary surgeries and being laid up OR dealing with the pain so that they're able to take care of their families. I like my doctor, who absolutely refuses to give me a hug (ethics) and who's constantly keeping up with what new developments will make his patients comfortable. He reminds me a lot of my rheumatologist (except that she will hug me).

Despite the lack of funds [to say the least] and this [major] annoyance with my doctor, I do know I have a lot to be grateful for. On Sunday, I had to go for milk. It was cold and drizzling rain, but I had a car. I saw a mother who had also taken her child to the convenience store; it's got to be an emergency before we'd pay their prices, and I wondered what she needed, and why she couldn't leave the child home where it was warm and dry. I had the money for a pint of the Willie Nelson Peach Cobbler that I wanted (I was willing to go without something else this week, to stay within budget). On the way home, I saw two different elderly men with shopping carts, going through people's recycling and trash for cans to return; I don't need to do that.

Obviously, I'm always grateful for my family, the roof over my head, my friends, my cat, and my laptop. Sunday just gave me a little more.

AND ... my mom may have seen a fawn or two out the window yesterday. Time to charge my camera batteries!!

i can't believe i made it through friday. thank you so much, mona.

so, renee, i live - live - not by my calendar but by the weather.com pain list - ten-day forecast. last friday was scheduled to be a "10"; furthermore, i'm being weaned off my narcotic because it's not strong enough to help, and when the dosage <>is strong enough, i really can't function. (that's why i carry the dictionary, the thesaurus...) so my narcotic level is only 1/3 of what it was a few months ago, and even though my brain is sharper, my body's feeling it. (even now - today was "moderate," i haven't typed since i left the office on friday. my fingers barely bent enough to turn the pages as i read. and tomorrow's another "8"...)

when doctors ask me, "what's your pain on a scale of one to ten?" i can't answer properly; i've taken to carrying (so they can see what i'm using) the Wong-Baker FACES Pain Rating Scale. numbers are too arbitrary for me. on a normal "8" day, using this scale, my arthritic knees and bum ankle may be "0-1" (benefit of weight loss), but my neck will be "4" and my hands will be "4-5."

mona also uses this forecast, and had emailed me the week before to remind me - like i need reminding! - that a bad day was coming. she also demanded that i come in to see her. it's been so hard for me to make the time, but i had no choice. i can't miss work because of pain; i can't afford it. (i just learned - mom and i have been screaming - along with my case worker, who got a Thank You card for it - that the money i'd banked for retirement/to leave to a sick friend for medical bills, if the pain gets me first - is "too much" to have, and that's why i've been denied. gotta see if, at the hearing, i dissolve my IRA and put the money under my mattress, so to speak, i can then be eligible for assistance. but i digress.)

i got to quest right after work on thursday. basic etiquette for a massage is the same as for the doctor's: shower, clean underwear, etc. (since i recently had a doctor thank me, again, for cleanliness when she's also got patients who are able to maintain their hygiene, but who don't, i figured i'd mention this very obvious - to me- rule!!)

got down to my boxers - it was weird being naked in the center of town! (and Unobtainable Crush, don't you wish you'd taken me up on my suggestion that you go for massage? >wink< ) and mona got to work. in an hour, hour and a half, she'd done a full body massage, with focus on my neck and back, and with work on my hands. she covers everything except the area on which she's working, so the client isn't exposed. she worked on both my legs, my back, etc., without making me feel at all naked.

we started talking about my dad, and my whole back tensed up. (Little Brother, when i tell you that he's affecting my health, think of what he's doing to mommy! - and mom won't even go for massage!!) mona had to force a subject change.

at another point, she had me breathing to the soothing ocean CD. unfortunately, i pictured the "ocean" ... and that hypodermic that washed up on the shore when Lu, Deb, and I were along the Atlantic in florida a few hours before we had dinner with matt gone...) well, we laughed...

i'm constantly amazed that the end of the massage feels as good as the beginning; i couldn't keep up that kind of strength, let alone the healing touch, for that amount of time.

i didn't want to move when i got up; i felt so good. but someone else was waiting, and all the linens needed to be changed (and i needed to get dressed) before the next person came in.

you're on your feet all day, renee; i'd suggest an hour with focus on your legs unless you have other pain i don't know about...

i'm not so self-centered as to think that everyone will love massage as much as i do. i do think that anyone with muscle pain would, however, enjoy the action of having that pain rubbed away! furthermore, she's been concentrating on my neck and my posture so that my spinal column will work better. (there's more to it than that, but this is just a blog post...)

got home and immediately, as per instructions, drank a lot of fluid.  in 24 hours, i'd had more than a half gallon of extra fluid.

i made it through the work day friday without puking :) the pain was seriously, honestly, at a "2-3" level, far below what i had expected. i stretched while my muscles were still relaxed. i'm sure that helped. (mona's given me follow-up stretching exercises, and part of what helps is that, when i go to her regularly, i remember to do them...) the worst pain was in my forearms; i went to the bank after work, but was afraid to drive to the supermarket. my neck pain was far below what i expected, though! made it today, sunday, to the store.

so i'm not touting a miracle cure for fibromyalgia; however, i'll tell you, honestly, mona has the right touch to help with muscular pain, and she relaxed the hell out of me!

give her a call. (it'll get you out, missy!) tell her i sent you and that you work for doc.

actually, all my connecticut friends should call mona (conveniently on myspace, too!)... thom, her leg massage is the thing for the mailman. you'll be the envy of your peers... my brother should set up a massage for his wife next time they come to town, so she doesn't have to deal with your wacky sister ;)

and Unobtainable Crush, if you go, i'll stand guard in the room and watch, uh... well, actually, now, your son's the right age for me...

i love saying this... drop my name; she'll hook you up.

whatever. mona, you're a life saver.

saturday, i was able to shower and dress, but not much else.

note: the "renee" to whom this post is written is the office manager extraordinaire at my office of my chiropractor, Dr. Steven Morrow. not only has she said that she likes my blog (gasp!) but she's also mentioned interest in treating herself to a massage. she just gave me a referral to a local doctor, and i'm using this post to return the favor.